advocating for aleigha – my rare disease story

Lately

Recently, I have felt an overwhelming sensation deep in my gut telling me that something is wrong. It’s a sick, twisting feeling that I cannot seem to get away from and the longer it’s here, the more emergent the need to run becomes. Unfortunately, I am no longer able to just pack a bag, jump in the car and be on my way. The state of my health not only impairs my physical and mental capacity to make even the shortest of trips, but it requires a massive amount of prior planning. The girl who used to lead great adventures on a whim now spends days organizing medical supplies, counting out pills and supplements, and resting in order to hopefully build up a reserve of energy. I often find myself troubled by this – another loss of life I am forced to grieve. I can, of course, adapt to my situation and find a new way to escape when the horrors of my health and my life become too much to bear. And while this may not be ideal, I am grateful for any opportunity to relieve my battered mind and body.

Guilt has also crept back into the space in my head as if I forgot to close a door or left open a window. I hate it, the whole idea of it. Feeling guilty for something so out of ones control seems wrong, but society’s get better mentality nearly demands it. It’s the guilt of surviving when others around me do not, the guilt of no longer being a productive part of society, the guilt that comes with the financial strain I put on my family, the guilt of letting those I love down when I can do nothing but try to survive, and worst of all the guilt that comes with watching the pain and suffering you bring onto the people you love. I can’t tell you how many times I catch myself apologizing for being sick or for having to cancel plans or for all of unanswered calls, texts, and letters. This is not the kind of person, friend, sister or daughter I ever wanted to be, but it is in fact who I have become and I am learning to be okay with that.

Along with guilt comes fear and trauma. I am afraid for the future and what that might look like for me. Because of this I try not to think too far ahead and stay in the present although my fears often times flood in especially during bouts of depression or insomnia. I truly try to live in the moment and when I do I am able to shed my worry and become the carefree spirit I am deep down, but illness is a demanding bastard that bends me to its will no matter how hard I may try to resist. It becomes traumatic after a while. My brain has rewired itself to cope with the consistent pain, loss of bodily function and cognitive ability, friends, and many of the things I loved to do. All of these things stolen from me, some suddenly and others over time, sparking anxiety, depression, and panic.

I wish I knew a way to accurately articulate the things I am feeling, but I don’t. I have become quiet. I never know what to say or when I do, I try to speak but nothing seems to come out. I started to isolate myself when a stranger mocked me for my badly shaking body – my tremor no longer masked by drugs because they ended up almost killing me. But it isn’t just strangers. Careless or frustrated words of the people I care about cut far more deep. The micro managing, the “stop being so lazy”s, the”try harder”s, and all the words that cut down, doubt, or undermine. The reality is that I am doing the very best I can. Each and every day I wake up and try as hard as I can, giving as much as my body will allow me to give. It may not always appear that way from an outsider perspective, but unless you have a chronic or life-altering illness then I simply don’t think one has the right to make that call. Empathy and unconditional love are the greatest gifts I have received along my journey, and if others are unable to, at the very least, try to meet me with open hearts and minds then I simply do not have the energy or time to waste on them. I’m not saying that I won’t treat them with those very qualities, but rather that I must invest in those who are able to reciprocate them. Time is extremely precious and in a body that tears me apart all on its own, I am only interested in genuine relationships that build and grow.

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2 thoughts on “Lately”

Thank you for sharing your story to the public! I came across this blog off of the app Bumble of all places. I know…kind of weird, but what the heck. Really enjoyed the “#LiveAuthentic? piece. Couldn’t have been more spot on! I suffer from ongoing depression, so I can relate in terms of mental illness to some degree. I tame the illness through running and coaching after work. In life, there are a lot of variables I can’t control. I can control this 100%. It’s therapeutic. Having that sense of control helps me fight off those inner demons, or however you want to call them. Continue sharing your story through your “control” (the blog) and connecting with others. You make an impact. You allow others to share their stories in a safe environment. Thank you. In fact, I would like to donate my Bloomsday winnings to the Advocating for Aleigha campaign once I receive the check.